Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice.

BACKGROUND: Over the past decades, there has been a growing international interest in user involvement in healthcare research. However, evidence on the management and impact of patient and public involvement in Nordic healthcare research remains limited. OBJECTIVE: The aim was to explore and delineate the current state, practice, and impact of patient and public involvement in healthcare research across different areas of healthcare and patient populations in the Nordic countries. METHODS: We conducted a scoping review using nine scientific databases and gray literature from 1992-2023. Sources were categorized as empirical or non-empirical. We used the Guidance for Reporting Involvement of Patients and the Public Short Form 2 checklist for reporting of patient and public involvement in healthcare research and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews. RESULTS: A total of 56 publications were included, consisting of 39 empirical and 17 non-empirical sources. Gray literature varied among countries and institutions encompassing different types of documents. We found an increase in the number of publications on patient and public involvement in Nordic healthcare research. This was evidenced by the growing number of references and institutional initiatives intended at involving the public, indicating the increasing emphasis on patient and public involvement in Nordic healthcare research. The terminology used to describe patient and public involvement varied over time. However, there has been a gradual narrowing down of terms as the concept of PPI has become more integrated into research practices, particularly with the involvement of funding agencies. CONCLUSION: The utilization of patient and public involvement in Nordic healthcare research has substantially increased, proliferated, and gained widespread acceptance across diverse healthcare domains. The variety of approaches challenged our scoping review in terms of systematic description and impact. Patient and public involvement was applied in one or more research stages using different methodologies and terms. International agreement on terms and definitions is needed for reliable interpretation of the use of patient and public involvement in Nordic healthcare research.

Over the past decades the importance of involving patients and the public as active partners in healthcare research has received growing acknowledgement internationally. Nonetheless, our knowledge regarding the degree of patient and public involvement (PPI) in the Nordic countries remains limited. This paper addresses this gap by investigating the status, management, and influence of PPI in healthcare research within the Nordic countries. The review of these aspects has given us a better understanding of PPI and its effects on healthcare research in the Nordic region. We looked at scientific databases and webpages including research papers, commentaries, and other materials from Denmark, Norway, Sweden, Finland, and Iceland. Our goal was to gather information and provide a thorough overview of PPI practices. Our findings showed that PPI is growing with gained acceptance across different areas of health research. PPI was used at different stages of the research process, but there wasn't a common agreement on its importance and the additional value it brings to the quality of research. The study was challenged by the many different terms and definitions, which affected the clarity of our study's purpose (or goals).However, we made efforts to address this by carefully reviewing the different terms and definitions used in the literature, striving to capture the essence of PPI in our analysis. By acknowledging this variation, we aimed to provide a wide-ranging overview while identifying the complexities and nuances related with PPI in the Nordic healthcare research. We assume that achieving international agreement on terms and definitions of PPI would certainly improve the trustworthiness in future reviews.

A national Danish proof of concept on feasibility and safety of home -based intensive chemotherapy in patients with acute myeloid leukemia.

Technological advances have made it possible to offer home-based chemotherapy to patients without health care professionals being present. Prior studies on effects of home-based treatment lack inclusion of patients with hematologic malignancies. We present data from a multicenter single-arm feasibility and safety study of home-based intensive chemotherapy in patients with newly diagnosed acute myeloid leukemia and their quality of life and psychological wellbeing. This national study included patients from six sites in Denmark who received intensive chemotherapy on programmed CADD Solis infusion pumps through a central venous catheter and were also managed as outpatients during treatment-induced pancytopenia. Data are presented from 104 patients, receiving 272 treatments with 1.096 (mean 4.57, SD 3.0) home infusion days out of 1.644 treatment days (67 %). Sixty-two of 168 (36.9 %) reinduction and consolidation treatment cycles ensuing pancytopenia phases were solely handled in the outpatient clinic. Patients reported high satisfaction with home-based treatment, which had a positive influence on their ability to be involved in their treatment and be socially and physically active. No unexpected events occurred during the intervention. Overall, patients improved in all quality of life outcomes over time. Home-based intensive chemotherapy treatment was feasible and safe in this population. ClinicalTrials.gov identifier: NCT04904211.

Social support as a moderator of healthcare adherence and distress in long-term hematopoietic cell transplantation survivors.

BACKGROUND: Treatment with hematopoietic cell transplantation (HCT) has potentially severe effects on physical and psychosocial functioning. Poor social support has been linked with physical morbidity and mortality as well as psychological distress in HCT survivors. This study tested a theory-driven hypothesis that social support buffers adverse effects of health stressors of comorbidities and graft-versus-host disease (cGVHD) on distress and adherence to recommended healthcare among long-term HCT survivors. METHODS: This cross-sectional study analyzed baseline data from a randomized controlled trial in adult survivors 3-18 years post-HCT. Data included medical records and patient-reported outcomes including cancer and treatment distress (CTXD), healthcare adherence (HCA), comorbidity index, cGVHD, ENRICHD Social Support Instrument (ESSI), Social Activity Log, and Health Self-Efficacy. We tested hypothesized models for HCA and CTXD using blocked hierarchical linear regressions. RESULTS: Among the 781 HCT survivors completing baseline assessment, 38% had > 3 comorbidities, 8% had moderate-severe cGVHD, 30% reported low social support, 30% reported elevated distress, and 49% reported low healthcare adherence. Social support and self-efficacy were directly related to both adherence and distress. Regression models supported the hypothesized moderated relationships for distress but not for healthcare adherence. CONCLUSIONS: The two tested models confirm that the health stressors of comorbidities and cGVHD are moderated by better social support and self-efficacy in their associations with lower distress but without moderating effects for healthcare adherence. IMPLICATIONS FOR CANCER SURVIVORS: Social support and self-efficacy confer protective benefits on healthcare adherence and psychological distress. Interventions are needed that focus on maintaining social networks or finding new networks if necessary. CLINICAL TRIAL REGISTRATION NUMBER: NCT00799461.

Patient ambassador support in newly diagnosed patients with acute leukemia during treatment: a feasibility study.

PURPOSE: This study investigated the feasibility of patient ambassador support in newly diagnosed patients with acute leukemia during treatment. METHODS: A multicenter single-arm feasibility study that included patients newly diagnosed with acute leukemia (n = 36) and patient ambassadors previously treated for acute leukemia (n = 25). Prior to the intervention, all patient ambassadors attended a 6-h group training program. In the intervention, patient ambassadors provided 12 weeks of support for patients within 2 weeks of being diagnosed. Outcome measures included feasibility (primary outcome), safety, anxiety, and depression measured by the Hospital Anxiety and Depression Scale, quality of life by the Functional Assessment of Cancer Therapy-Leukemia and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and symptom burden by MD Anderson Symptom Inventory, the Patient Activation Measure, and the General Self-Efficacy Scale. RESULTS: Patient ambassador support was feasible and safe in this population. Patients and patient ambassadors reported high satisfaction with the individually adjusted support, and patients improved in psychosocial outcomes over time. Patient ambassadors maintained their psychosocial baseline level, with no adverse events, and used the available support to exchange experiences with other patient ambassadors and to manage challenges. CONCLUSION: The patient ambassador support program is feasible and has the potential to be a new model of care incorporated in the hematology clinical care setting, creating an active partnership between patients and former patients. This may strengthen the existing supportive care services for patients with acute leukemia. TRIAL REGISTRATION: NCT03493906.

Patient ambassador support: Experiences of the mentorship between newly diagnosed patients with acute leukaemia and their patient ambassadors.

OBJECTIVE: The study explores how newly diagnosed patients with acute leukaemia and their patient ambassadors experience the mentorship during the patient ambassador support programme. METHODS: Explorative semi-structured individual interviews (n = 28) were carried out in patients with acute leukaemia (n = 15) and their patient ambassadors (n = 13). Interpretive description was the methodological framework used for the thematic analysis of the qualitative interview data. RESULTS: Identified themes were as follows: (a) exchanging life experiences (subthemes: individualised support and a meaningful return); (b) existential cohesion; (c) interreflection; and (d) terms and conditions (subtheme: break in journey). Patients experienced a feeling of being understood, the cohesion leading to hope and a feeling of being able to cope with their situation. Patient ambassadors experienced a sense of meaningfulness and gratitude for life. CONCLUSIONS: Patients and patient ambassadors experienced benefits from the individualised support. Their shared experiences created a connection and mutual mirroring, which led to a sense of hope and gratitude for life. Initiatives that introduce peer-to-peer support in newly diagnosed patients with acute leukaemia as part of treatment and in daily clinical practice are crucial. Future studies should further examine the feasibility of peer-to-peer support interventions along the trajectory of acute leukaemia.

The motivation to volunteer as a peer support provider to newly diagnosed patients with acute leukemia - A qualitative interview study.

PURPOSE: To identify and describe the motivation to volunteer as a peer support provider (PSP) to newly diagnosed patients with acute leukemia (AL). METHOD: A phenomenological individual interview study based on one open-ended question. The participants (n = 12) had previously been treated for AL and were recruited from an ongoing peer support feasibility study. The interviews were carried out prior to participation as a peer support provider. A phenomenological methodology developed by Amadeo Giorgi was used for the analysis of the data. RESULTS: The essence of the phenomenon can be characterized by the following characteristics: "A wish to move on with life", "A wish to instill hope to those in a hopeless situation" and "Expecting own course of disease to become meaningful". The motivation reflected the experience that when helping others they also helped themselves. CONCLUSION: Former patients treated for AL are motivated to undertake their new role as PSP because their own course of disease becomes meaningful, helps facilitate a better post-cancer recovery through greater self-confidence while instilling hope to newly diagnosed patients with AL. CLINICAL IMPLICATIONS: It is important to identify readiness before recruiting former patients for the PSP role and to develop peer-to-peer programs to sustain motivation. Future studies should examine how motivation changes over time while practicing as a PSP to newly diagnosed patient with AL.

Patients' experiences and social support needs following the diagnosis and initial treatment of acute leukemia - A qualitative study.

PURPOSE: This study explores how newly diagnosed patients with acute leukemia (AL) experience the diagnosis and the initial treatment, and their need and preferences for social support. METHODS: Explorative semi-structured individual interviews were carried out in patients with AL (n = 18) four to sixteen weeks post diagnosis. Thematic analysis was used to analyze the qualitative interview data. RESULTS: Identified themes were 1) Jolted by the diagnosis, and subtheme Loss of personal autonomy; 2) Restoring normality in everyday life, and subtheme Facing a new social identity; and 3) A lifeline of hope. Being newly diagnosed with AL was experienced as traumatic, which negatively affected personal autonomy and everyday life. There was a pressing need to restore a sense of normality in everyday life while managing a new social identity as a cancer patient. Social support from family, friends and other patients were invaluable and experienced as an important lifeline. CONCLUSION: Receiving a life threatening diagnose and undergoing chemotherapeutic treatment had a negative impact on everyday life which required re-establishing daily life activities. This increased the need for social support which had a distinct role in facilitating the patients' coping strategy. CLINICAL IMPLICATIONS: It is important to support and strengthen the patient's social network from the time of diagnosis. Future studies should examine the feasibility and benefit of experienced-based social support from peers (former patients) to patients with AL.